Our little girl Esther's CDH story: Happy Birthday

Friday, April 12, 2013

Happy Birthday

I woke up trying to imagine what today would have looked like had May 2, 2012 not played out the way it did. I don't do that; I don't dwell and struggle with "what if's" and "couda, shoulda, woulda's". I feel I've got quite an imagination, but I can't imagine what Esther would look like. That stings a bit, makes me feel a little less or maybe just realize more who's missing today. I thought about how it would be to sing happy birthday to Esther. It is odd, because those attempts to imagine just don't fit; strange that make believe doesn't fit. The truth is my girl has gone where I long to be. Happy birthday would definitely be out of place with heaven all around and our savior Jesus there with you. It brought me back to her bedside at children's hospital. Alleluia, alleluia for the Lord God almighty reigns! I sang to my sweet girl, and we praised Him together. Yes I do miss her so. Holding hands, gazing into her eyes, singing sweet songs to God. Papa and daughter; a perfect match made by the one and only perfect One.
Today is the day, that one year ago my first daughter was born. I stood by my bride and watched her push with everything she had to bear Esther into this broken world; an imperfect world with defect and death. Esther cried, two small squeaks! Hope had been born! I prayed. I cried. I worshipped and begged the creator of all to give us moments with this beautiful child. With each moment of new life, hope grew. I lost all ability to form thoughtful prayer and only cried Abba Father.
Today I am still Esther's papa, but God is Father of us all. God is my papa who sings to me, holds my hand and lifts me up. Dear God, give me the strength to live for you and no one else. For His glory, is the infinitely powerful name of His son Jesus I pray,
Amen!

We'd be eating farmhouse pancakes with you today sweet girl!!!!

Lyrics to the Song "Pilot Me" By Josh Garrels

Pilot Me

I will arise and follow you over
Savior please, pilot me

Over the waves and through every sorrow
Savior please, pilot me

When I have no more strength left to follow
Fall on my knees, pilot me

May your sun rise and lead me on
Over the sea’s, savior pilot me

O’ Lord

3 comments:

aimeeApril 12, 2013 at 2:17 PM
Blessed post. Wow. LOVE!
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Ali WorkentinApril 12, 2013 at 9:58 PM
Hugs to both of you today. Having been where you are I can so identify. Hugs as you celebrate your sweet little girl.
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AnonymousMay 21, 2013 at 10:22 PM
Have been missing updates on your new little one and how everyone is doing. Photos would be fun too! I would love an update soon. :-)
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What is Congenital Diaphragmatic Hernia (CDH)?

A congenital diaphragmatic hernia (commonly known as CDH) is an opening in the diaphragm (The dome-shaped muscle that separates the chest cavity from the abdomen.) It occurs at approximately 9 weeks gestation, when the diaphragm, for an unknown reason, fails to close completely. The hole allows the abdominal organs to push into the chest cavity. CDH is a life-threatening birth defect because it limits the growth of the lungs.

CDH occurs in every 1-2500 live births in the United States. Approximately 1,800 babies are born each year with CDH. Approximately 50% of all babies born with CDH die. Luckily in Seattle where were told we have a 80-85% chance they will survive. CDH happens just as often as Spina Bifida and Cystic Fibrosis yet many have never heard of CDH. To explain it a little further:

The diaphragm is a muscle that separates the abdominal cavity from the chest. It’s a divider. At 8-12 weeks gestation, depending on what you read, this muscle develops and comes together, as it should. But sometimes it doesn’t. Nobody knows why, it is random. There isn’t enough evidence to suggest that it is genetically destined to happen, and it isn’t because of anything the mother or father did or didn’t do. The diaphragm simply forgets to close. In 90% of diaphragmatic hernia cases, this happens on the left side. It’s also more common in girls.

This happens at the same time that everything inside of the fetus is forming and finding their places, and if there’s a hole, sometimes organs will find their way through it. Sometimes the organ involvement is minimal, sometimes not. In any case, if there is anything that is supposed to be in the abdominal cavity but is incorrectly located in the chest cavity, it takes up valuable space that the lungs need in order to fully develop.

When a baby with known CDH is born, she has to be intubated and placed on a ventilator immediately. Crying can make the hernia worse. If all techniques of getting her adequate oxygen that way are exhausted, she’ll be placed on ECMO, which is a whole different monster. Once a baby with CDH is placed on ECMO, his chance of survival drops to 50%. ECMO comes with its own set of complications (and ECMO is a complication in and of itself), so we’ll focus on that if things get to that point.

The thing about hernias is that they don’t repair themselves. They either get fixed or get worse. Surgery is necessary to repair the hernia: Making an incision below his ribs, moving his organs into place, and connecting the tissue of the hernia (or repairing with a patch if there is not enough tissue to connect). The surgery itself is pretty straightforward, but the issue lies in his ability to maintain adequate oxygen levels.

Even if you move the organs back into place, even if the hernia is repaired perfectly…the lungs still missed out on valuable development while in the womb. The months following surgery are dedicated to recovery from surgery as well as ensuring proper oxygen levels. The average NICU stay after birth is 2-3 months. Babies with CDH may come home with forms of oxygen assistance if everything else is stable enough.

Our little girl Esther's CDH story

Rhonda and Jason

Friday, April 12, 2013

Happy Birthday

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